Gold Ribbon Hero Janea A

Monthly Archives: November 2016

“Reason this person is a Gold Ribbon Hero: My daughter fought CHILDHOOD Bone Cancer(Osteosarcoma) for 2 years, before passing. She was diagnosed at age 12, after finding a tumor on her left tibia. She endured 10 months of the normal chemo protocol for this type of cancer, along with a knee and partial tibia replacement. She finished chemo, only to have an amputation 3 months later, due to damage from chemo. She then, another 3 months later, relapsed. Chemo no longer worked, and eventually spread to her brain, causing her passing. She lived her life inspiring others, and being from a small town, she left a huge imprint on many hearts! She always had a smile on her face, and if it wasn’t for the obvious leg, you would never know she was sick. She enjoyed life. She handled the news of her passing with the most strength I had ever seen in her! She dreamed of attending prom, as her passing was to take her before she would finish the 8th grade. Her dream came true, as the local community came together and arranged for her to attend prom, her older brother along side as her date. He had graduated the prior year, so neither of them were students there, but the school was happy to let them attend. It was one final great lifetime experience that my two children would share. My daughter spent the next day in excruciating pain, and then passed the following morning! She lived, and passed with more courage than I have ever seen! Her brother was her hero, and she was ours! This is a picture of my daughter and son, just 36 hours before she passed.” – Melony S

“Reason this person is a Gold Ribbon Hero: 6 years old had brain cancer at age 3 now has leukemia at age 6 always smiling never complains. Has had months and months of chemo. Stem cell transplant still smiling my grandson my hero” – Sandi P

2016 National Childhood Cancer Awareness Tree

ACCO is very pleased and excited to announce that the 2016 National Childhood Awareness Tree will be proudly displayed this holiday season at Marina Park in Newport Beach, California. The 23-foot-high tree honoring children whose lives have been forever altered by childhood cancer will be a prominent feature of the 108th Newport Beach, California Holiday Boat Parade, complete with a tree lightening ceremony and fireworks! ACCO and the City of Newport Beach hope you will join us from Wednesday, December 14 to Sunday, December 18 to participate in this very special event.

The holiday festivities at Newport Beach will begin on December 14 at 4:30 with family activities such as face painting, caricature artists, and vendors selling tasty treats. At 6:10, the 2016 National Childhood Cancer Awareness Tree will be lit during a special commemorative ceremony, followed by an amazing fireworks show. The holiday festivities will continue at Marina Park as visitors are encouraged to view the beautifully-lit houses surrounding the Park and wait for the arrival of the Boat Parade, scheduled to come past Marina Park at 8:40pm. The Tree will remain on display throughout the remainder of the Boat Parade festivities through Sunday, December 18! This event is free of charge and open to the public.

What is the National Childhood Cancer Awareness Tree?

The holiday season can be an exceedingly difficult time for families whose lives have been forever altered by childhood cancer. Since 2000, ACCO’s annual “Awareness Tree” has honored childhood cancer warriors by decorating a holiday tree with gold ribbons bearing the name, age, and state of children affected by this terrible disease. The 2016 Awareness Tree will stand tall at Marina Park in Newport Beach, CA displaying thousands of beautiful gold ribbons, each a tribute to an amazing child.

If you would like to honor a child who is fighting or who has fought childhood cancer with a gold ribbon on the 2016 National Childhood Cancer Awareness Tree, we ask you to place your order by Sunday, November 27. You will be asked to select the number of ribbons you would like, then add the child’s name, age, address, and an optional tribute for each ribbon. The tributes will be shared weekly on ACCO’s website. Please note that friends and family may purchase more than one ribbon per child. If you would like, the ribbon(s) will be returned to you in January.

To have your child’s name honored with a gold ribbon on the 2016 Awareness Tree, please be sure to place your order by Sunday, November 27. Click here for the order form.

What is the Boat Parade?

We would like to thank the City of Newport Beach, California and the Newport Beach Chamber of Commerce for making the 2016 National Childhood Cancer Awareness Tree a special part of its annual holiday festivities! The Newport Beach Boat Parade is one of Southern California’s premier holiday events and has even been hailed by the New York Times as “one of the top ten holiday happenings in the nation”. We are honored to be part of such an exciting and special holiday event!

The Boat Parade features almost 100 beautifully-decorated boats of all shapes and sizes, from yachts to kayaks. The parade of boats begins off Bay Island and slowly makes it way around Newport Harbor, offering amazing viewing locations, free of charge, from nearly anywhere around the Harbor. Many homes around the harbor are decorated as well as part of the Ring of Lights; participating homes and boats are eligible for prizes for best decorations! The parade starts at 6:30 every night for five nights: December 14 through December 18. The lighting of the 2016 National Childhood Cancer Awareness Tree, followed by fireworks, will kick off this year’s Boat Parade on December 14!

ACCO invites all who can to join us on Wednesday, December 14 at 6:10 for the tree lighting ceremony, fireworks, and Boat Parade. Information on travel, accommodations, and best viewing locations can be found at the Boat Parade’s official website: https://www.christmasboatparade.com/.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

ACCO would like to welcome another amazing partner—Colorado Rock Bottom Restaurants—into our community and, more importantly, we would like to express our most heartfelt “thank you” for adding their support to the ongoing fight against childhood cancer! On November 16 and 17, five Colorado Rock Bottom Restaurants in Denver and Colorado Springs invited ACCO to help them kick off a month-long awareness campaign and fundraiser dedicated to supporting kids with cancer and their families.

And what an incredible kick-off it was! Downtown Denver Rock Bottom, along with Rock Bottom’s other locations, was decorated in gold—the national awareness color for childhood cancer—and the entire restaurant staff participated in this special event by wearing pajamas (why pajamas? See below!) or an ACCO Awareness Shirt highlighting the names of thousands of children whose lives have been impacted by childhood cancer. Staff members invited guests to learn more about ACCO and the critical importance of the fight against childhood cancer. And the highlight of the evening was the first tapping of Rock Bottom’s signature “Wicked Elf Ale”!

A portion of the proceeds from purchases made at any of the five Colorado Rock Bottom Restaurants between November 16 and December 31 will go to ACCO in support of its mission to give critical resources and learning tools designed to empower children and their families through every step of their cancer journey. ACCO provides these resources free of charge to any family facing a diagnosis of childhood cancer. Patrons are also offered the opportunity to make a donation for a gold ribbon voucher to be displayed in the restaurants throughout the holiday season. If you are in Denver or Colorado Springs between now and New Years’ Eve, we hope you will stop by a Rock Bottom Restaurant, enjoy an amazing meal, and make a contribution to the fight against childhood cancer!

Why Pajamas? Rock Bottom’s Corporate PJammin’® Event

We might guess that at first, patrons visiting Downtown Denver Rock Bottom on November 16 might have been a bit confused about why their server was wearing pajamas. Why pajamas? Because children fighting cancer spend days, weeks, and sometimes even months in the hospital, wearing pajamas, while undergoing intensive chemotherapy or surgical procedures. In fact, children in treatment for childhood cancer sometimes spend more time in their pajamas than they do in regular clothes!

The signature ACCO event, Pjammin’®, selected by Colorado Rock Bottom Restaurants to kick off their Go Gold® for the Holidays fundraiser, offers the opportunity to demonstrate understanding and compassion for what children facing childhood cancer go through. By wearing their pajamas, the amazing staff at Rock Bottom was sending a powerful message of caring to these children and their families, reminding them that they are not alone. As the team at Rock Bottom Restaurants have learned, Corporate PJammin’ events like this are an innovative and exciting way to foster team spirit while supporting an important cause that everyone can believe in.

If you are interested in organizing a Corporate PJammin’ or other signature event at your place of work, we encourage you to visit our website at https://www.acco.org/corporate-events/ for more information.

CraftWorks Restaurants and Breweries, our newest partner in the fight against childhood cancer!

Once again, ACCO would like to thank Kelley Cochran and the team at CraftWorks Restaurants and Breweries, Inc., as well as the staff at all five Rock Bottom locations, for joining with us in the fight against childhood cancer. CraftWorks Restaurants and Breweries is the parent company and “charitable arm” of Rock Bottom Restaurants, and is dedicated to working with organizations like ACCO to increase awareness of important charitable causes, as well as organize fundraising events. ACCO is so excited to have the opportunity to work with CraftWorks in the ongoing battle against childhood cancer. We are looking forward to supporting the “Rock Bottom Restaurants Go Gold® for the Holidays” through the rest of the year, as well as continuing this vital partnership into the New Year and beyond!

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Layla’s Story

Today, we would like to introduce you to Layla. Layla is a strong, courageous four-year-old who has been battling a rare, inoperable brain tumor for the past 15 months. Diagnosed at the age of two, Layla’s tumor has not responded to “traditional” chemotherapy-based treatments, and her family now faces the daunting prospect of attempting less well-known options, some well-researched and some still experimental, in the on-going search for an effective weapon against this devastating disease. In the meantime, they take every day as it comes, finding tools and resources to help Layla cope with the difficult days and sharing her smiles and giggles on the good ones. We hope you will join us in offering Layla and her family our support as they embark on this next stage of their cancer journey.

Juvenile Pilocytic Astrocytoma

Layla has Juvenile Pilocytic Astrocytoma, a rare brain tumor that grows in the supportive tissues of the brain known as astrocytes. In Layla’s case, the tumor is located on her brainstem, blocking the natural flow of cerebral spinal fluid. At the time of her initial MRI, the spinal fluid had begun to fill her brain causing headaches and mobility issues, and eventually leading to “life-threatening” pressure that required emergency surgery to drain the fluid and relieve the pressure.

Because of its location on the brain stem, oncologists could not surgically remove the tumor without risking Layla’s life. Another traditional tool in the fight against brain tumors—radiation—is not appropriate for children Layla’s age due to the extreme risk of severe brain damage. Still, the prognosis was hopeful: JPA is usually a benign, “low grade” tumor that Layla’s team felt would probably not grow. They placed a permanent shunt to enable the normal drainage of spinal fluid around the tumor, with the expectation that it would last for 10-15 years. Layla would receive an MRI every three months for the first year to monitor the tumor, with the frequency of MRIs decreasing over the years.

Unfortunately, the complications began almost immediately. First, Layla’s shunt over drained, causing massive bleeding. Two months later, the shunt failed to drain again, leading to more hydrocephalus. Another couple of months, another malfunction: Layla was back in the ICU for a failed shunt, hydrocephalus, and now bleeding as well. Each of these complications required emergency surgery to relieve the hydrocephalus, then additional surgeries to repair damaged tissue and replace the shunt.

Throughout this difficult period, routine scans of the tumor showed good news: as expected, the tumor was not growing. Yet once again, Layla’s family learned just how quickly bad news can follow good: just two weeks after a positive scan, another follow-up scan showed 25% growth in the size of the tumor. Layla immediately began chemotherapy through a clinical trial. Unfortunately, after three months of chemotherapy, it has now become clear that Layla’s tumor is not responding and she has been taken off the chemotherapy in order to avoid the potential for negative side effects.

Hero Beads and Port-a-Cat: “Life Changing” Resources for Layla and Her Family

As difficult and as devastating as this journey has been for Layla and her family, they have found much-needed help and support from friends and family, as well as tools and resources to help them cope. ACCO’s informational booklets have helped Layla’s parents navigate the incredibly difficult world of childhood cancer, while Layla loves Marvelous Marleigh, the only age-appropriate book Layla’s mother could find to help Layla understand what was happening to her. And perhaps most importantly, as her mother notes, “Cozy the Port-a-Cat was a life-changing therapy tool for her and her ACCO blanket is her most coveted comfort item.” Each time Layla visits the hospital, Cozy is treated like a patient, too, with his own regimen board just like Layla’s!

And Layla and her family have been able to document Layla’s journey with ACCO Hero Beads. Choosing a Hero Bead for every procedure gives Layla a sense of accomplishment and a feeling of ownership over her individual story; her Hero Beads provide a meaningful way to visually represent what she has gone through over the past 15 months. ACCO Hero Beads can be purchased individually or in bulk from our store; 100% of the proceeds continue to fund ACCO’s programs to help and support kids with cancerand their families! For more information about ACCO’s Hero Bead powerful program, we encourage you to visit our website at: https://www.acco.org/hero-beads/.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

Dashiell’s Story: Transitional Liver Cell Tumor

Dashiell’s cancer journey began on March 2, 2012, when, at four years old, he was diagnosed with a malignant liver tumor called hepatoblastoma. Although devastated by the diagnosis, Dashiell’s family believed that Dashiell could beat this “highly curable” tumor. Treatment involved chemotherapy, followed by surgery to remove the tumor. After three more months of treatment, Dashiell received a liver transplant. While the fight was not yet over, Dashiell’s family hoped he had taken the first step on the road to a long, healthy life.

Unfortunately, at his very next follow-up visit, Dashiell’s family received even more devastating news: unusual for hepatoblastoma, the tumor had spread to his right lung. He immediately underwent another surgery to remove the nodules, only to discover more lesions in both lungs only a month later. His oncology team confirmed their worst fears: what had been masquerading as hepatoblastoma was actually a highly aggressive form of liver cancer known as Transitional Liver Cell Tumor (TLCT). TLCT is an exceedingly rare diagnosis, and in fact has only been confirmed by the medical community as a distinct form of liver cancer within the past two decades. A specific course of treatment has not been agreed upon by oncologists, and TLCT frequently does not respond to traditional treatment protocols.

Unwilling to give up, Dashiell’s family sought a second opinion from the leading authority on TLCT, Dr. Arthur Zimmerman, Emeritus Director of the University of Bern, Switzerland. Dr. Zimmerman reviewed Dashiell’s case free of charge to confirm the terrible diagnosis. Dashiell underwent 10 more rounds of highly aggressive chemotherapy, as well as an experimental chemotherapy, but his cancer did not respond.

Dashiell passed away on June 17, 2013 at 5½ years old. Dashiell’s family took comfort in knowing that Dashiell’s body handled his treatment extremely well, and despite the aggressive protocols he underwent, his sole side effect was his hair loss. As his mother states, “Dashiell had a blessed life, as sweet and blissful as any child could possibly dream…He is deeply loved and all of his days were filled with pure happiness.”

Dashiell’s Legacy: The Difficult Decision of Tumor Donation

Thanks to the incredible strength and bravery of his loving family, Dashiell’s short but fierce fight with Transitional Liver Cell Tumor has left a lasting and critical legacy. In the last weeks of his life, Dashiell’s family decided to donate his tumor to the oncology team at Cincinnati Children’s Hospital, where he received his treatment, with the stipulation that the donation would be available to anyone who wanted to use it and that all findings would be made public. The decision to donate Dashiell’s tumor was not an easy one. It required what Dashiell’s mother refers to as one of her “hardest ‘mommy’ moments”: renting a bouncy house for his celebration of life for his 5½-year birthday, then walking across the street to the coroner’s office to be ready to flash freeze the tumors within 24 hours of Dashiell’s passing.

Yet as difficult as the decision was, Dashiell’s legacy has been a critical one and it lives on today. The oncology team was able to keep the cell line from the tumor alive and it is now one of only three confirmed cases of TLCT with data-banked bio-specimens worldwide. The research this donation enabled has begun to confirm what many oncologists have believed for many years: that cancers are mutating in response to our efforts to eradicate them. According to Dashiell’s oncology team, his tumor cells are currently being used in clinical trials for adult and pediatric cancers in three countries (Germany, Poland, and Japan).

By making the difficult decision to take action in the face of the worst news they could have received—to donate his tumor to research—Dashiell’s family is fighting back against the disease that took their son’s life.

“His legacy is honored as we advocate for childhood cancer awareness/projects/programs/ organizations, better treatment options, advancement in higher cure rates and increased medical research funding. Dashiell’s indomitable spirit lives on in the hearts of his family, friends and supporters.”

Dashiell’s story inspires other families who sadly will also face the same difficult decisions. Their contribution to childhood cancer research has provided hope for treatment and cure for other children diagnosed with this disease and hope for the day when no child has to die from cancer.

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

“Reason this person is a Gold Ribbon Hero: Molly was diagnosed with hypodiploid ALL in August of 2014 and had a bone marrow transplant in December of 2014. She missed her entire freshman year of high school. She is taking a stand against childhood cancer by being an ambassador for iDance4aCURE.” – Christy B

“Reason this person is a Gold Ribbon Hero: Caylee was 4 yrs d when she was diagnosed with AML and rare mutation. She did amazing with her first round of chemo and handled losing her hair very well. Round 1 failed and fevers started in before we started round 2 to try again. Through the 2nd round of chemo she vomited a lot, had a 12 hr nose bleed and for almost 4 weeks she rarely had a fever under 103 with constant reducers. Through everything she still kept her spunk, her sass and her sense of humor…never complained and took everything in stride. She gained her wings after a 62 day fight. She always said her brother was bigger than she was but she had more brave in her.” – Jill G

“Reason this person is a Gold Ribbon Hero: Isaiah was only 8 months old when he was diagnosed with a medullablastoma brain tumor. It was smaller than a tennis ball, larger than a golf ball. The tumor caused him to stop crawling and “failure to thrive”.
Before he could even walk, he began chemotherapy and radiation. The first two years of his life were spent fighting. He learned to crawl again, and quickly with the help of his siblings learn to walk.
All throughout his battle he brought his family much joy and laughter.
Isaiah is now 11 years cancer free, 14 years old and a freshman in high school. He has suffered some hearing loss, some dental damage due to radiation treatment and his growth has been slightly stunted. He continues to make us smile, laugh and at times scratch our heads and what a miracle he is to us.
He doesn’t remember much, that is my burden/gift to carry as his mother and caregiver. He is my inspiration.” – Karen A

The American Childhood Cancer Organization is a 501(c)(3) public charity, whose programs and services are funded entirely by private donations, foundation grants, and corporate contributions.
IRS Tax ID 52-1071826 All donations are tax-deductible as allowed by law.
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